CHRISTINA KOCI HERNANDEZ/CHRONICLE
Gwendolyn Elfers and boyfriend, Guillermo. Guillermo blows on cat, Monkey's, belly.Gwendolyn Gwendolyn Elfers has been a heart patient at Stanford University her entire life. She is 34, and one of the first patients to move directly from Packard Children's Hospital to the new Adult Congenital Heart Disease Clinic at the main wing of Stanford. Leading this program is Dr. Daniel Murphy who was recruited out of Cleveland and is now Elfers' cardiologist.

Photo: CHRISTINA KOCI HERNANDEZ

CHRISTINA KOCI HERNANDEZ/CHRONICLE
Gwendolyn Elfers and boyfriend,...

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Photo: Penni Gladstone

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LIFESCIENCES11132005_0066_PG.JPG model of a heart in an exam room.
Gwendolyn Elfers has been a heart patient at Stanford University her entire life. She is 34, and one of the first patients to move directly from Packard Children's Hospital to the new Adult Congenital Heart Disease Clinic at the main wing of Stanford. Leading this program is Dr. Daniel Murphy who was recruited out of Cleveland and is now Elfers' cardiologist San Francisco Chronicle, Penni Gladstone
Photo taken on 10/5/05, in Palo Alto,

Photo: Penni Gladstone

LIFESCIENCES11132005_0066_PG.JPG model of a heart in an exam room....

Continuity of Care / Stanford creates a place for those who have outlasted pediatric congenital cardiac clinics

Adult congenital heart disease was once considered a self-canceling phrase. If you had congenital heart disease, you didn't live to be an adult.

So Gwendolyn Elfers was born at the right time to be born blue. Her aorta and pulmonary arteries were reversed, and if she was born maybe five years earlier, she probably wouldn't be alive. Instead, she is 34, manages a high-tech office on Montgomery Street and is only halfway through a lifelong relationship with her cardiologists at Stanford University Medical Center.

This didn't use to happen either. An adult who survived a congenital defect eventually outgrew pediatric care and had to find an adult cardiologist, often unfamiliar with a particular congenital condition. So Elfers was lucky again, being among the first to walk directly from Lucile Packard Children's Hospital down a 300-yard hallway to the new Stanford Adult Congenital Heart Disease Clinic. She didn't even have to go outside.

"I just went from being the oldest person in the waiting room," she says, "to one of the youngest." This means she no longer has to step over toys to get to the reception desk, and once there, she doesn't have to communicate that she is the patient, not the mother of the patient.

"When you are at Packard, it is because you are a kid," she says. "As an adult, it just feels like you don't have your own place."

She would still feel this way if pediatric cardiologist Daniel J. Murphy Jr., 53, hadn't been recruited from the Cleveland Clinic four autumns ago to enhance cardiac services for children at Packard. Murphy knew the best way to do that was to enhance the transition to an adult clinic.

Because a heart defect can be repaired but never cured, there are always long-term problems. But patients and their records never tend to arrive at adult care, especially when they are no longer dragged to checkups by their parents.

"If they felt good, they never saw a cardiologist again for years and years and years," Murphy says. "They may surface again when their heart rhythm changes or they get pregnant or sick. Frequently, it's way after they should have had some intervention when they come back."

Last summer, the adult congenital clinic opened as a unique division, with its own offices, staff and new equipment. Now when patients turn 18, they are escorted down the long hallway.

"Until this last decade, not enough of these kids survived to make a full clinic," Murphy says, while walking from his office in pediatrics to his office in adults. "It's a whole new population, almost as though a new disease came onboard."

So new that the Adult Congenital Heart Association was founded less than 10 years ago and it already puts the number of American adults living with congenital defects at 1 million and growing by 5 percent a year. It isn't that more people are being born with defective hearts. The growth is due to earlier detection and a greater survival rate.

"They just got lost in the follow-up," Murphy says, offering an example. "I know a cardiologist who was born with heart disease and had surgery for his defect. And he doesn't see anybody."

In Northern California, the population living with congenital heart conditions has been increased by the program at Stanford, pioneered by the legendary Dr. Norman Shumway, who performed the first adult heart transplant in the United States at Stanford in January 1968.

"With Shumway here for that many years, there were a lot of kids operated on at Stanford who had heart defects and survived," says Murphy. One was Elfers, who had her first open-heart surgery at 22 months, in 1973. Shumway performed the four-hour Rastelli procedure.

"It's always nice to throw that name around," she says of Shumway.

Her condition is called "transposition of the great vessels," and required a Dacron conduit to reroute the blood flow. "This type of an operation had at least a 25 percent mortality rate when she had it," says Murphy. "Now it would be less than 2 percent."

Elfers grew up in Arcata, Humboldt County, and at least once every year she was driven seven hours to Stanford for a checkup. At age 12, she had a second open-heart surgery by Shumway to replace the conduit. Still, she danced ballet and tap and played on her high school tennis team. She'll probably need at least one more surgery to replace parts, but she's already been around Stanford long enough to see both her surgeon, Shumway, and her pediatric cardiologist, Dr. Paul Pitlick, retire.

Before Pitlick left, he introduced Elfers to his successor, Murphy, who had run the adult congenital heart program at the Cleveland Clinic, the top cardiac program in the country for many years running. Murphy and his colleagues were profiled in the 2003 book "Walk on Water: Inside an Elite Pediatric Surgical Unit," but Stanford wasn't a tough sell. He grew up in Menlo Park and got his undergraduate degree at Stanford.

At their first appointment, Murphy handed Elfers a flyer for the Adult Congenital Heart Association. The next regional meeting happened to be in Mountain View, so she helped organize it. "That was the first time in my life I've ever met anybody else with any kind of congenital heart defect," says Elfers, who fits into the most severe category, "great complexity." Now she's on the board of directors, and next year the national meeting will be in San Francisco for the first time. Murphy is co-director and will give a keynote speech. Elfers might speak, too.

She had some practice last year when she came back to Packard, at Murphy's request, to speak to a support group for parents of kids with heart defects.

"I am very, very lucky as far as adult congenital patients are concerned, because I've had this continuity of care," she says. "Most don't have it or don't even know that they need it."